Privacy

Cinderella said it best, “You don’t know what you got till it’s gone.”

There are certain things in life that you don’t realize how important or special they are to you until they are gone. One of the greatest group of thinkers of the 20th century, the hair band, Cinderella, nailed it when they belted out their epic ballad, “Don’t Know What You Got (Till It’s Gone).” As my disease progresses and gradually takes away more and more parts of my life, I get the opportunity to see what types of things we take for granted while we have them, but greatly miss when they are taken away. One of the many elements of “normal,” everyday life that I miss the most is privacy. The simple life pleasures of being completely alone with your thoughts and feelings, being able to easily have a private phone call, or even just having the freedom to turn Cher’s, “Believe,” on full blast and singing along without worrying that someone will hear (not that I want to do that…) are parts of your life that you rarely think about, but they are extremely important in maintaining your happiness. Ever since I got my trache when I was a freshman in high school, I have never truly been alone, and as a result I have learned how valuable this aspect of life is, how it is so often taken for granted, and how to create periods of pseado-privacy even though I have to have people nearby all the time.

After getting my trache and needing to be suctioned at a moments notice, I could never be alone.

I have not been more than a room away from another person for over 12 years. Since my lungs are so weak and fragile from my horrific, near-death experience when I was 15, and they could start filling with secretions at any time (which happens a few times a day), I have to always have someone nearby to suction my lungs and keep me from drowning. This means that for my entire adult life that I have never had real privacy. Every time I ask a girl out, someone is right there to witness my success…or failure. Every time I have a family squabble, someone is there to hear us air our dirty laundry. Every time I get pissed off about my disability and just want to scream obscenities in a cathartic rage, someone is there to witness my weakness. I do want to make it clear that my nurses and caregivers do everything they can to give me my space (and I greatly appreciate this), but due to the amount of assistance I need doing almost anything, they can only do so much. The fact that it is nearly impossible for me to experience any real level of privacy has caused me to really think about and examine what is so special about it, and how to get back these traits even when you cannot be totally alone.

All of us, whether we like to admit it or not, alter our behavior to some degree as a result of the people around us. We all wear these various “masks” so that people will like us more, want to be around us more, and accept us into their social world. This desire to be accepted by others is nearly as hard wired into our brains as things like food and shelter, and there is nothing wrong with this. In many situations in fact, this is a necessary social skill. However, it is just as necessary to also have periods of time when you can take off all of your “masks” and spend some time being the unaltered, uncensored, and unabridged you. Due to our fear of being judged and our desire to be accepted by people, the only way to feel completely safe and free enough to just let your true colors shine is to have total privacy. A great example of this is how you will belt out your favorite Katy Perry song at the top of your lungs in the shower or alone commuting to work, but put someone within earshot, and you won’t sing a peep. There is something special about having total privacy that releases you of all of your mental filters and inhibitions and lets you live and act with complete freedom.

This freedom to be yourself may not sound like something that is really critical to your life, but I assure you it is. Being able to turn off all of your social filters and such, and having time to just do whatever strikes you without worrying about what anyone else will think, gives that part of your mind a chance to rest and find its center. It is like the way your computer needs to be totally shut down occasionally in order for it to reboot itself and run optimally. It takes a lot of energy to be socially “on” all the time, and unless you give yourself some “off” time, you will eventually get burned out and exhausted, which will affect your happiness and life in general. This is why privacy is so important. It gives you the chance to be yourself, reboot your brain, and maintain your happiness.

I always have a nurse within earshot, which makes finding complete privacy next to impossible.

I realized how important having some degree of privacy is shortly after I had gotten my life put back together after getting my trache when I was in high school. As I am sure you remember, high school is like the Olympics of being a social chameleon and wanting to fit in. You would think that since I was a huge nerd and was not even on the radar of the “cool kids,” that my place in the social hierarchy would have been set making me immune to these pressures to fit in, but unfortunately you would be wrong. Surprisingly, even among the nerds and geeks there are things like peer pressure, it is just carried out in different, sadder ways (like Klingon insults). So, like every other teenager anytime I was around anyone else in my peer group, I was busy making sure I was acting in a way that would be socially acceptable. This would not have been a big deal if I had been able to go home, have some privacy, and decompress from the rigors of teenage social drama like my peers. The problem though was that in addition to having to carefully navigate the social world at school, I was also still getting used to having a caregiver by my side all the time. Since I was not used to having nurses yet, and I was still getting to know most of them, I also felt like I had to be “on” at home too. This resulted in me having to be “on” all the time. I always had a “mask” on, because I never had complete privacy. I was able to maintain this constant disguise for a while, but it took a lot of mental energy to live this way, which eventually took its toll on me mentally.

This unceasing mental strain from never getting complete privacy and the revolving door of social facades eventually took over my personality completely. I was so exhausted from always being “on” and had gone so long without having the privacy to be myself, that I actually started losing sight of my real, unfiltered personality. I knew that if I wanted to maintain my happiness (and sanity) that I had to find a way to make myself feel comfortable enough to take off my “masks” and let go. Since I couldn’t get complete privacy due to my nursing needs, I realized that I had to learn to let loose whether my caregivers were there or not. This was not easy, and it took me a long time, but eventually I adopted a mindset that helped me do this. I had to realize that the nurses were with me for the soul purpose of making my life easier/better, and that part of that involves my happiness. If having them in my home makes me act in a way that hurts my happiness, this totally defeats the whole point in having them. So, while I try to be considerate and make as hospitable an environment as I can for my nurses, there are times when I have to just let loose and be me even if that means they may have to endure a heavy metal band or hear me talk like a truck driver. Gaining this perspective, which most nurses I have discussed it with understand and encourage, allowed me to create periods of pseudo-privacy where I could “power down” and recharge mentally.

Since I have always relied on the help of others to do things, I have always struggled to find periods of total privacy.

Even though I have been able to build a happy, fulfilling life by creating periods of pseudo-privacy, I still miss the feeling of being completely alone. I would love to get even 12 hours where I could function totally on my own, but that is not in the cards for me. I hope however, that my lack of total privacy has made you think about how you utilize your own moments of solitude, and appreciate how important they are in your life. Whether it is a few minutes with your morning coffee when you wake up before everyone else, during your commute to the office listening to the radio, or late at night when you surf the web after everyone else has gone to bed, it is crucial that you have some time to let go and be yourself. When was the last time you were alone, took off all of your social “masks,” and let yourself go completely uninhibited? That is too long ago. Any amount of time is too long, and you should try to be yourself as often as possible. I am not saying you should just do whatever strikes you all the time (like with everything in life, find balance), but you should try to be as authentic and sincere to the real you as you can. This will ensure that you don’t lose sight of yourself and become some “masked” version of you, as well as helping you maintain your happy, successful life.